Newbie - confused and needing advice

[Anonymoususername2]

I'm desperately confused and frightened, and looking for advice. Probably quite a long post coming up (sorry).

I'm currently 42 and have been pregnant twice in ten years - once with my first boy naturally after three years TTC and again with my second son following an IVF cycle two years ago. I have some kind of immune problem and heavy periods, nothing else, and we were treating that to conceive.

Anyway, in July, I had a second cycle of IVF to TTC a third child. Something went wrong during the egg collection and I ended up with an A&E visit for internal bleeding & three cysts - a clear cyst on the left ovary and two complex cysts on the right. My fertility consultant became worried after three months and did CA-125, which was elevated, and referred me to an oncologist privately through my husband's health insurance.

The oncologist did an MRI that revealed I had adhesions in my Pouch of Douglas, my ovaries are glued together by the complex cyst (which looks like a classic endometrioma) and the endometrioma is also glued to my rectum. Subsequently, a different IVF clinic did a 3D ultrasound that shows mild adenomyosis.

The oncologist wanted to do a laparoscopy to remove and biopsy the cysts, and remove endo, and, at the time, I was scared of cancer and agreed to do this. However, after speaking to the IVF clinic, they advised that removing the cysts would destroy my ovarian reserve totally. And, after seeing the MRI report, I realised I must have extensive endometriosis - probably even deep infiltrating. I also read some medical research papers that showed that, once the MRI had seen endo, it was highly unlikely I also had cancer.

I didn't really have any symptoms of any of this until my last period, probably because the first IVF clinic had put me on Provera for a couple of months. However, my last period, I had really bad period cramps the day before it started and needed to use prescription codeine + naproxen + paracetamol to sleep (and then I flooded, which is usual for me). About six days later, I suddenly had a bad pain in my hip that made me limp, which seemed to be referred from the right ovary. Since then, I've had a constant gnawing spike pain in my right ovary that is not controlled by any painkillers, plus a slightly elevated body temperature and nausea/retching. I don't know if it's the endometrioma bursting (it had gone on the ultrasound I did last week and I had a pool of fluid in my abdomen - the clinic thought it might be hiding behind an ovary) or the adhesions on the scan, or what.

I've got an appointment for January with the BSGE centre in Harley Street and I'd prefer them to do a surgery, but the oncologist thinks he can do it and has an earlier slot.

I'm currently just completely exhausted, in pain and confused. I have no idea if I should let the oncologist work on me or should go to the specialist centre (even though it takes longer). I don't even know if acute gnawing/knifelike pain in an ovary for days on end is typical for the endometriosis I didn't know I had. I don't see the point in going to A&E again because last time they just gave me painkillers and told me to come back if I had symptoms of sepsis/haemorraghing.

Just wondered if anyone had any personal experience/advice...

[Jade2006]

hi I’m sorry you are going through all this , I would personally wait for the bsge center to do it .

As you may end up having to have surgery again by the right specialist.

The hip pain will be from the cyst , when I had a very large one I use to get pain that radiated down my legs and they it use to ache and I didn’t know why.

How big is the cyst ?

Januarys not to long to wait and if you are worries go to the a and e with the bsge center, I would defo not just go my local hospital as they are crap I won’t let them touch me .

Sorry your struggling with pain, your ca125 will be raised with endometriosis.

Don’t let the oncologist touch you , I lost a ovary because my surgery was done by a cancer hospital because they thought it was cancer even though I told them I think I have endometriosis.

It’s hard as sometimes nothing will take that pain away , see if your doctors will give you stronger meds xx

[Anonymoususername2 in reply to Jade2006]

Thank you so much 🥰

I have a clear cyst on my left ovary that’s about 6cm, which has been growing since my IVF cycle in July. The endometrioma on my right ovary, which is giving me pain, was 3.5cm, but it’s currently either 2x1cm or not there at all - so, I’m unsure if it’s burst or drained. The IVF consultant I saw today felt it wasn’t especially relevant as she says individual cysts in endometriosis can appear, drain, disappear and reappear again, and the important thing to note is simply that I have endometriosis and endometriomas, and they can - unfortunately - cause symptoms like mine.

Thanks for reassuring me that it was the right decision to avoid the cancer surgeon. I was doubting myself with all the pain over the weekend xxx

[Jade2006 in reply to Anonymoususername2]

Its hard as you don’t know what to do for the best sometimes especially if your getting two options and opinions.

I’m just going from my story which unfortunately on the editing list for urgent surgery which is frustrating as I had a major one last year and still suffering with severe pain at times .

I’m also doing Ivf at the minute.

January will come .

The cyst may have leaked abit possibly, they are very painful , mine was twice your size shocking really .

I have one that is 5cm at the minute it’s not cause to much trouble , but I find that my right side where the cancer surgeon took my ovary that’s where the pain is , so my advice is don’t let them touch you if they think it’s endometriosis as you don’t want them taking body parts away.

Good luck with eveything , and keep on to you doctors x

[Misswah]

I can't say I've had any personal experience as such with what you're going through but I can tell you my biggest regret after fighting for a diagnosis for years was the fact that I waited so long to see a specialist and let a general gynaecologist do my first laparoscopy. I can understand you wanting to have things done sooner rather than later, but with things like endo and adeno, personally, I think you'll be much, much better off being seen and treated by a specialist. You'll get better care as they actually know what to look for and they have additional skills to treat endometriosiss. Regardless of what you decide, I wish you the best of luck with everything!

[ocke2030]

hi i have aden and endo and yes nigjtmare all around i would go to a gynae without specialist interest in endo (bsge) centre my ca125 was raised as yes i panicked but gynae have said its quite common with endo who knew hey these doctors have the experience and training etc to deal with endo